Why we can’t forget about people with schizophrenia
It’s exciting to see so many organizations and individuals coming out to support and shed light upon mental illness. Brave people are standing up and sharing their stories, something that can be very frightening to do. The fight against stigma is gaining support daily. But in our efforts to dispel the myths and stereotypes around mental illness, there are still diseases that are often overlooked or treated differently. When it comes to advocacy, we can’t forget diseases like schizophrenia and schizoaffective disorder.
The fear of the word
Even within the mental health community, there is a great deal of stigma around disorders involving symptoms of psychosis like schizophrenia. The words alone can make people uncomfortable. Like the word “psychotic.” There are times where I’ve avoided using this word. It’s draped in so many heavy layers of stigma that I sometimes feel people would tune out or turn away rather than continue reading and engaging, potentially missing an important message because of the stigma around a single word. Even the word “schizophrenia” is scary for some because the stereotype is so strong. These words are often tossed around and twisted into slurs and jokes, but suffering from severe diseases is not a joke.
A “lesser” illness
People can get behind the fight to end the stigma around depression and anxiety. But many organizations don’t seem to include schizophrenia and other disorders. A portion of the reason voices for schizophrenia may be missing from mental health organizations’ fight against stigma is that they don’t have anyone to represent the diseases. Disorders involving psychosis are less prevalent than depression and anxiety. That can make it more difficult to find people to share their stories. In addition, many with severe mental illness and brain diseases are unable to articulate what they’re going through. And many may be too afraid to speak up and risk stigmatization. But in some cases, it feels like we are left out because we are seen as having lesser diseases, like psychotic disorders are a separate, lower level of mental illness.
In my own life I’ve experienced the weight of the stigma. I shy away from sharing my schizoaffective diagnosis in the workplace for fear of discrimination on the part of my employers and coworkers despite legal protections for those with mental illnesses. When it comes to accessing care, I’m lucky to have insurance through my employer, but my psychiatrist still regularly faces pushback from the insurance company when prescribing my antipsychotic medication. And while I’m overwhelmed by the amount of support I’ve received from friends and family, there are some who have stepped back when the only change was a diagnosis. Yet this is just a drop in the bucket compared to the abuse and discrimination others with similar diagnoses have faced.
Level of functioning should not determine support
I often feel like there is a disparity in people’s minds even within psychotic disorders. Sometimes I feel like people see me as different than those who don’t function as highly as I do. Yet there is no fundamental difference. Because of this, I often end my talks with a reminder that just because someone does not look like me, share my level of education, socioeconomic status, or state of mind does not make them any different than myself. If anything, those who don’t have access to treatment or for whom treatment doesn’t work need our support even more. Just because someone is homeless or struggling does not make them any less important or deserving of help.
Who we are
People with schizophrenia and schizoaffective disorder are just that, people. Like many other people with living with mental illness, I experience symptoms that manipulate my thoughts. My symptoms may be different than those of someone with depression or anxiety, but that doesn’t mean people like me are fundamentally different or less worthy. People with schizophrenia can have hopes, dreams, and goals. They can have families and friends and are just as capable of love as anyone else. Despite the stereotype, people with psychosis are no more dangerous than anyone else. In fact, people with schizophrenia are actually more likely to be the victim of violence than the perpetrator. And whether someone is symptomatic or not, we are all just as human as anyone else.
Why you should care
Whether you know someone with schizophrenia or schizoaffective disorder or you’re reading this out of curiosity, you should care about advocacy for people with these diseases, and not just those of us who function highly. Because I’m not special, I was just lucky. At the time of my first hallucination, I was already in treatment for depression and anxiety and I felt comfortable speaking up. My treatment began at the first sign of psychosis. That’s not common, but it made an incredible difference in managing my symptoms. I am not the only one capable of that, either. Early intervention programs have shown repeated success in managing symptoms before they become severe. But not everyone has that luxury.
Because of the stigma or the cost, many suffer in silence for months or years before receiving treatment. Others cannot access treatment at all. People with schizophrenia and schizoaffective disorder regularly face discrimination in housing, employment, from doctors, as well as the general public and even family and friends in some cases. I am someone’s daughter, sister, girlfriend, coworker, and friend. I’m just like your daughter, sister, coworker, or friend. My diagnosis shouldn’t make you treat me any differently.
You can help make a change
It’s going to take work and time, but if we advocate for schizophrenia and schizoaffective disorder as much as we advocate for other diseases and stop treating those with these diseases as a lower class, we can change people’s lives. We can create a world where schizophrenia isn’t a bad word and people with serious diseases are treated just like anyone else. We can give them the opportunity to thrive, something that everyone deserves. You can help create this change. Be open-minded, educate yourself, and don’t leave people with schizophrenia and schizoaffective disorder out of the conversation around mental health and brain disease.
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